Cure and prevention.

[arz33pro]

Up to this date are they any closer to a cure. Do they know what causes this terrible disease. Are there any ways to prevent getting ALS.

 

[CindyM]

I think they have to learn what causes it before they can figure out how to prevent it. That makes sense, I suppose...When they find a cure, it will be BIG news, I assure you!

 

[Al]

In answer to your questions. Not really. No and no again. Sorry but we haven't given up hope yet.

AL.

 

[hopingforthebest]

Causes of ALS?

Friday, OT came visit and said she has 6 ALS patients, including my husband and all have said they had occupations where they were exposed to chemicals.
We believe this must play a big part in getting ALS. But still no studies that point to ALS that we are aware of.

Patty

 

[L4dybugg]

Friday, OT came visit and said she has 6 ALS patients, including my husband and all have said they had occupations where they were exposed to chemicals.
We believe this must play a big part in getting ALS. But still no studies that point to ALS that we are aware of.

Patty

That is interesting, my husband is waiting for a diagnosed. and he has worked for 23 yrs at a foundry that makes aluminum castings. He has been exposed to: chemicals, abestous, welding fumes just to name a few. About a year and a half ago, my husband had a heavy metal test done, and it came back, to our surprise clean/normal. He just had another 24 hr heavy metal test done, we don't know the results of that one yet.

Had your husband worked near chemicals?

 

[wright]

There are studies that show some heavy metals can cause motor neuron death but as of yet, there are no studies to correlate those heavy metals to ALS.

There is more than likely multiple causes for ALS (just like there are multiple causes for cancer, for example) . . . but what might be the common denominator is, the people that have ALS are predisposed to getting it. If heavy metals turn-out to be one of the causes (again, there is no evidence that they are a cause), then someone not predisposed to getting ALS would not get ALS if exposed to those heavy metals . . . while someone who was predisposed to the same levels of heavy metals, would get it.

As I have said in the past: there is a lot of research going on right now . . . more in the last decade than in the previous 100 years. There are journals that publish studies that are dedicated solely to ALS research. Remain hopeful.

 

[fmarino]

I hope we don't see you on the forum anymore. You are too young to be so worried about these types of things. Enjoy your youth. It will be over before you know it. :smile:

 

[patricia1]

There are studies that show some heavy metals can cause motor neuron death but as of yet, there are no studies to correlate those heavy metals to ALS.

There is more than likely multiple causes for ALS (just like there are multiple causes for cancer, for example) . . . but what might be the common denominator is, the people that have ALS are predisposed to getting it. If heavy metals turn-out to be one of the causes (again, there is no evidence that they are a cause), then someone not predisposed to getting ALS would not get ALS if exposed to those heavy metals . . . while someone who was predisposed to the same levels of heavy metals, would get it.

As I have said in the past: there is a lot of research going on right now . . . more in the last decade than in the previous 100 years. There are journals that publish studies that are dedicated solely to ALS research. Remain hopeful.

I still believe My symptoms started after a DPT injection.
Can that be possible?


Pat1

 

[skydog]

Any connection between ALS and street drug Ecstasy?

Full disclosure: My symptoms started soon after I took a tablet of ecstasy (MDMA) at a bachelor party in Vegas in April. I am not a drug user; this was an exception to my normal behavior which in hindsight I deeply regret. I used ecstasy approx 7 times over the last 10 years. I am 31 years old with worsening symptoms of ALS and appointment with a neuro next week.

Is there any research suggesting a connection between ALS and use of ecstasy? My own research has uncovered a connection between Parkinson's and ecstasy. I now know ecstasy contains free radicals and that a surplus of free radicals may trigger ALS. I didnt this back then. Needless to say - I am deeply depressed.

 

[rose]

Full disclosure: My symptoms started soon after I took a tablet of ecstasy (MDMA) at a bachelor party in Vegas in April. I am not a drug user; this was an exception to my normal behavior which in hindsight I deeply regret. I used ecstasy approx 7 times over the last 10 years. I am 31 years old with worsening symptoms of ALS and appointment with a neuro next week.

Is there any research suggesting a connection between ALS and use of ecstasy? My own research has uncovered a connection between Parkinson's and ecstasy. I now know ecstasy contains free radicals and that a surplus of free radicals may trigger ALS. I didnt this back then. Needless to say - I am deeply depressed.

Skydog, it seems we had a poster a while back that claimed just the opposite, that ecstasy helped her symptoms on a temporary basis, then after it wore off, she'd be back to how she was previously. I don't think she had a lot of credibility though.

Good luck with your appointment next week. :smile:

 

[Jennifer51]

lithium trials uk

I have never taken any form of any drug other than prescription drugs from a doctor and I have not worked with any chemicals..so where did I get it... I believe that some people have a predisposition to it, like cancer or even allergies..
UPDATE on CLINICAL TRIALS UK..
This is a precis of a letter I just had back from the MND assoc in the uk..
So long as there are no unforeseen obstacles the MND assoc will be funding a European trila of LITHIUM. Currently the evidence of Lithium as a treatment is not strong, but it cannot be discounted.. The UK clinicians need answersto assist their decision making as to whether or not to make the drug available. The trial has been adopted by DeNDRon (just google that) The European study will run in parallel with the recently announced North American study. It is necessary to conduct both of these trials due to the requirement to repeat experiments to ensure that the results obtained from both trials are correct. The results would be comparable and therefore will provide more date, quicker.
I believe these trials will be double blind, randomised placebo controlled and for people who have been diagnosed within the past 3 years. I have put my name forward to be considered and am fundraising like crazy to help provide the £500,000 needed to conduct the UK trial.
In addition to this trial, the mnd assoc uk are supporting 25 other research areas.
It just has to get us one step closer

 

[Jennifer51]

lithium trials uk

Hi Al...here is the link to the mnd association page with the full details of the lithium trial.
http://www.mndassociation.org/research/research_explained/news_in_research/mnd_association.html

 

[Al]

Thanks for posting that Jennifer.

AL.

 

[grantst44]

Hello all~ My husband was diagnosed last month but has had symptoms since around Jun 2007. They are getting worse, like his speech and swallowing. He has lost a lot of weight, (50 pounds?). He is still working and he's very stubborn but I was wondering if anyone can tell me what to look for. Is it weakness? Because he says he's strong but it takes him a long time to eat anything and his jaw on both sides feels like its shaking when he opens it a certain way. He says his jaw gets exhausted just from eating. He's 62 and I have tried to gently talk to him for instance about getting a feeding tube. He's not ready or not ready to admit this but he can't afford to lose more weight. His doctor told him he needs to gain weight and talked to him about his diet. After reading a lot of postings on this site, it's very discouraging and you all are very brave and compassionate people. Thanks.
Karen

 

[BethU]

Hi, Grantst ... I so sorry that your husband (and you) are going through this, but glad you found us. You will find a lot of support here, especially from the other caregivers on this forum.

The most worrisome thing to me is your husband's weight loss. It sounds like your husband is in denial (I was, too, at first, so I sympathize), but it is essential that he try to gain some of that weight back. My neuro told me that gaining back lost weight works even better than Rilutek at slowing down progression and extending life. (Rilutek is the only med approved for ALS.)

If he enjoys his meals, that's great! But he's clearly not eating enough to maintain his weight, probably because eating is so slow and difficult. So he needs some boost to regain his lost weight.

I make milkshakes with Ensure, protein powder and ice cream that have between 700-1,000 calories each. I had lost 24 pounds, and have gained back 10 in a few months. The milkshakes are really good. Maybe he would agree to drink something like that in the evening.

This is one place where PALS (Patients with ALS) have control over this disease. The eating tube may be something he will need very soon, especially if he's unable to take in enough to keep his weight up. But do try to convince him right away to eat supplements. And, as you prepare his meals, give him the highest-calorie foods you can think of. It is really important for him not to loose more.

Good luck,
BethU